• Iets te kiezen

    Iets te kiezen

    Blogs
    Posted on Sunday, April 30th, 2017 at 2:11 PM by

    Eind april 2017. Wij hebben onze verkiezingen achter de rug, Amerika heeft intussen een nieuwe president en in Frankrijk zit men er nog middenin.

    En waarvoor kiezen we dan? Vóór vooruitgang, tégen het bestaande etablissement, mínder belasting…? De verkiezingsprogramma’s zijn, zoals altijd, veelbelovend.

    Zoveel wensen, overwegingen, keuzen. Zoveel belangen. Waarop baseer je dan jouw keuze? En heb je achteraf het gevoel dat de uitkomst ook jouw keuze vertegenwoordigt?

    Ooit heb ik ergens gelezen dat een gezond mens wel 1000 wensen heeft en een ziek mens maar 1.

    Slechts 1 wens. Is dat wel zo? En wat zou die ene wens van het zieke mens zijn? Weer de oude worden? Kwaliteit van leven? Vooraf beter geïnformeerd zijn? Of de wens van een prettig einde? Ik kan zo dus al meerdere wensen bedenken. En een wens betekent een keuze voor het pad dat je wilt bewandelen richting jouw wens. Hierin verschillen verkiezingen en zorg niet zoveel.

    Als voormalig kankerpatiënt hoor ik andere mensen, geconfronteerd met kanker, vaak zeggen dat zij achteraf misschien wel een wens, maar geen keuze hadden. Een sprong in het diepe. Of, althans het gevoel niets te kiezen te hebben gehad. Want na de diagnose volgt al snel een plan van aanpak en de arts heeft het beste met jou voor, dus zo gaan we het doen. Vervolgens draait de medische molen. En welke kant de molen ook opdraait; terugdraaien kan niet.

    Zelf kreeg ik in 2010 de diagnose borstkanker. Ik was 36. Ondanks dat dit maar 7 jaar geleden is, was de kankerzorg op een andere leest geschoeid. Bij een jonge vrouw als ik werd zekerheidshalve grof geschut ingezet: amputatie, bestralingen, chemokuren, hormoonbehandelingen of combinaties daarvan. De term “overbehandeling” was nog in onderzoek en kwam zeker tussen arts en patiënt niet ter sprake. Enfin, afgaande op mijn gevoel ging ik in gesprek met mijn oncologe. “In onderhandeling” is een betere omschrijving.

    “Waarom?” vroeg ik hardop, want ik voelde niets voor grof geschut. “Ja, waarom?” vond zij eigenlijk ook. Haar beeld van de ideale behandeling strookte niet met de toen heersende richtlijn; zij maakte zich hard voor maatwerk, met oog voor kwaliteit van leven. Zij was destijds een van de uitzonderlijke oncologisch chirurgen die bij een borstsparende operatie, plastische chirurgie toepasten. Een revolutie in 2010!

    We werden het eens over mijn behandeling en gingen gezamenlijk voor minder is meer. Achteraf lijkt het misschien meer geluk dan wijsheid. Hing mijn avontuur van toevalligheden aan elkaar: nadenken, durven vragen en grenzen te stellen. En de juiste arts treffen. Voor veel patiënten gaat deze vlieger helaas niet op en dat moet veranderen.

    Als gezond mens heb ik daarom slechts 1 wens: geen toevalligheden als het om gezondheid gaat. Hoe? Door te kiezen voor heldere en toegankelijke informatie en communicatie met en tussen alle belanghebbenden. Dan kunnen we nadien allemaal het gevoel hebben dat deze uitkomst onze keuzes vertegenwoordigt. En daar maak ik mij, samen met Inspire2Live hard voor.

    Marisca Urbanus van den Honaard
    Patient Advocate bij Inspire2Live

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  • Oudejaarsavond 2016

    Blogs
    Posted on Saturday, December 31st, 2016 at 6:08 PM by

    Goede voornemens, zouden deze niet wederzijds moeten zijn?

    Op een dag als vandaag zie ik op sociale media veel goede voornemens de revue passeren. De meeste daarvan herken ik van voorgaande jaren; meer sporten, gezonder eten, minder alcohol en stoppen met roken. Uitstekende voornemens, zeker voor het voorkomen van kanker of het kunnen bijdragen dat je in remissie blijft. Zelf denk ik aan een heel ander voornemen gerelateerd aan kanker, niet alleen voor mijzelf en mijn gezondheid maar ook voor die van anderen, ook het ongeboren kind bij zwangere vrouwen. Stop of ontwijk het gebruik van hormoonverstorende stoffen is mijn voornemen.

    bonnetjeIk haal mijn overvolle portemonnee leeg en sorteer de enorme hoeveelheid oude bonnetjes. Deze licht verkreukelde nog van een vakantie in Frankrijk en ik zie weer waarom ik juist dit bonnetje heb bewaard. De achterkant zegt “Papier gegarandeerd zonder Bisfenol en zonder Fenol”.

    Wat is hier zo bijzonder aan?

    Bisfenol is een van de vele hormoonverstorende stoffen.  Wat een aantal kankersoorten gemeenschappelijk hebben is de eventuele hormoongevoeligheid van de tumor (borst, eierstok en prostaat ) en de stoffen die dit in de war kunnen brengen of kunnen aanzetten tot groei. In het Engels “endocrine disruptors”, en de wetenschap publiceert al een jaar of 20 over de relatie met kanker .

    Dus wat we eten uit blik (met laagje Bisfenol A/BPA ), opwarmen in plastic in de magnetron (weekmakers of ftalaten) of op onze huid smeren (parabenen als conserveringsmiddel), de cosmetica met allerlei toevoegingen (triclosan), de waterdichte ademende regenjas die we aantrekken of waar we onze nieuw gekochte schoenen mee inspuiten (PFOA), de pannen met antiaanbaklaag en de dagelijkse bonnetjes van de kassa (BPA dringt door de huid heen). Dit zijn allemaal voorbeelden van hormoonverstorende stoffen.

    We gaan ervan uit dat deze stoffen ongevaarlijk zijn en dat de overheid dit onderzocht en goedgekeurd heeft voordat de producten op de markt gebracht werden. Helaas, de bedrijven die dit soort stoffen verkopen hoeven niet vooraf te bewijzen dat deze ongevaarlijk zijn. Het is aan de mensen die schade ondervinden om te bewijzen dat het schadelijk is. Denk aan asbest of het roken van sigaretten; een langlopende omgekeerde bewijsvoering. Én al zou er onderzoek gedaan worden naar dit soort stoffen dan komen we niet verder dan in vitro onderzoek of in vivo op muizen. Er is geen ethische commissie die toestaat dat we dit soort stoffen bewust in verschillende concentraties op mensen gaan smeren of inhaleren en dan gaan kijken of zich kanker ontwikkeld. Dit betekent ook dat de industrie tot in den eeuwigheid kan roepen dat het niet wetenschappelijk valt aan te tonen dat de stoffen een causaal verband aantonen met kanker en de mens.

    Er wordt aan één kant hard gewerkt aan het vinden van behandelmethoden tegen kanker maar er wordt weinig gedaan aan het verwijderen van dit soort stoffen uit ons dagelijks leven. Dus we krijgen eerder hormoon-dempende (antioestrogene of antiandrogene) medicijnen voorgeschreven in plaats van de hormoon-boostende uit het directe milieu te halen.
    De consument of de patiënt is zich veelal niet bewust van dit soort stoffen, vindt het te moeilijk te begrijpen of sluit zich er voor af, dus wordt er doorgegaan zoals we altijd al deden. Het zijn ook de niet artikelen die veel gedeeld worden via sociale media ook al wordt er af en toe ruchtbaarheid aan dit thema gegeven

    De EU werkt momenteel aan een lijst waarin dit soort endocriene verstorende stoffen vermeld worden maar veel stoffen zullen daar niet op komen te staan. Bisfenol A komt zo als het er nu uitziet niet op de lijst. Van de 574 bekende stoffen wil de EU er mogelijkerwijze slechts een 170 tal in de lijst opnemen.
    Er is veel kritiek vanuit de hoek van de wetenschap naar de EU toe , maar dit krijgt niet de doorslag naar de consumenten.

    Jullie en ik kunnen proberen de stoffen te vermijden als goed voornemen maar als de overheid dit ook niet als goed voornemen voor zijn burgers heeft, dan gaat de besluitvorming in Brussel gewoon onder de radar door en is het vechten tegen de bierkaai. Dan wordt het net als alle andere voornemens lastig vol te houden, vooral door de onduidelijkheid waar deze stoffen inzitten.

    Ik eet in ieder geval geen eten meer uit blik, maak mijn eigen huidproducten, koop alleen nog schoenen die ik kan poetsen met ouderwets ledervet, bak in gietijzeren pannen en ga nee zeggen tegen kassabonnetjes, behalve in Frankrijk.

    Rest mij nog jullie een gelukkig en gezond 2017 toe te wensen!

    Patient Advocate Jolanda van Rooijen

    Bronvermelding

    1. https://www.ncbi.nlm.nih.gov/pubmed/25569640
    2. http://www.ncbi.nlm.nih.gov/pubmed/18524946
    3.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1469675/
    4.  http://www.cwhn.ca/en/node/22343
    5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1241417/
    6.  https://decorrespondent.nl/2835/Hoe-in-Brussel-bedrijfsbelangen-het-van-milieu-en-gezondheid-winnen/130789890-40f749a7
    7. https://www.theguardian.com/environment/2016/jun/16/new-rules-to-regulate-europes-hormone-disrupting-chemicals
    8. http://policyfromscience.com/wp-content/uploads/2016/07/Open-Letter-to-Andriukaitis-about-EDC-Criteria1.pdf
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  • Beyond the confusion about red meat and cancer

    Beyond the confusion about red meat and cancer

    Blogs, Gaston Remmers
    Posted on Wednesday, November 18th, 2015 at 9:01 PM by

    Since the WHO recently published that the consumption of red and processed meat increases the likeliness of developing bowel cancer, confusion is mounting among consumers all over the world as to what exactly the advice means, and what should be done about it.

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  • Concentratie van kankerzorg: een dreigende stoelendans?

    Concentratie van kankerzorg: een dreigende stoelendans?

    Blogs, Ineke Schouwstra
    Posted on Friday, October 16th, 2015 at 7:44 PM by

    Kent u ’m nog? De stoelendans, een guilty pleasure (of misschien vond u ‘m werkelijk afschuwelijk) van de verjaardagsfeestjes van vroeger. Het was zaak om vooral niet op te gaan in de muziek

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  • De dokter zelf als placebo

    De dokter zelf als placebo

    Blogs, Gerda Schapers
    Posted on Tuesday, August 25th, 2015 at 5:36 AM by

    Op 30 oktober 2014 sprak Fred Lee (schreef het boek ‘Als Disney de baas was in uw ziekenhuis‘) op het congres  ‘de Patient Centraal’ bij Domus Medica in Utrecht. Fred Lee toonde op basis van uitgebreid literatuuronderzoek het klinische effect van empathie aan.

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  • Iedere schipper weet dat een sluis vertraagt!

    Iedere schipper weet dat een sluis vertraagt!

    Blogs, Peter Kapitein
    Posted on Wednesday, July 22nd, 2015 at 4:14 PM by

    Minister Schipper heeft zich afgelopen week niet van haar beste kant laten zien als het om longkanker patiënten gaat. Een goed werkend medicijn, Nivolumab, wordt patiënten onthouden en in een sluis geplaatst.

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  • Onder of boven het middenrif; het verschil tussen leven en dood?

    Onder of boven het middenrif; het verschil tussen leven en dood?

    Blogs, Peter Kapitein
    Posted on Wednesday, July 1st, 2015 at 6:49 PM by

    ‘Omdat bij mij de kanker boven het middenrif zit kan ik naar dat medicijn fluiten, terwijl als het er onder had gezeten ik het wel zou krijgen’. Het is de emotionele uitbarsting van een patiënt met borstkanker en een BRCA-gen mutatie.

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  • Een hopeloos beroep, maar wel in een hoopvolle tijd!

    Een hopeloos beroep, maar wel in een hoopvolle tijd!

    Blogs, Peter Kapitein
    Posted on Friday, May 15th, 2015 at 7:49 AM by

    25 maart organiseerde Inspire2Live een congres omtrent longkanker. Een van de buitenlandse gasten was Benjamin Besse van het Institut Gustave Roussy. Benjamin begon zijn betoog met te vertellen hoe hij zijn vrienden vertelde dat hij longarts ging worden. Hoongelach viel hem ten deel.

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  • De stem van Mark Bos, de stem van een patiënt

    De stem van Mark Bos, de stem van een patiënt

    Blogs, Coen van Veenendaal
    Posted on Tuesday, April 28th, 2015 at 5:35 PM by

    Afgelopen donderdagavond zijn we allemaal getuige geweest van een ongelooflijk mooi en vooral indringend interview met Patient Advocate Mark Bos. Met al zijn bij elkaar geraapte kracht en al zijn prachtige kwetsbaarheid

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  • Taakgericht of patiëntgericht?

    Taakgericht of patiëntgericht?

    Blogs, Gerda Schapers
    Posted on Wednesday, April 15th, 2015 at 7:40 PM by

    Woensdagochtend ben ik als eerste aan de beurt voor mijn operatie dus dinsdagavond check ik in. De afgelopen jaren ben ik nogal eens ‘ onder het mes’ geweest om wat lastige tumoren te laten verwijderen. Twee keer in mijn eigen ziekenhuis en maar deze keer in een speciaal kankerziekenhuis.

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  • Vreselijk goed nieuws

    Vreselijk goed nieuws

    Blogs, Geert Bakker
    Posted on Wednesday, March 25th, 2015 at 7:36 PM by

    Sinds ik kanker heb, gebruik ik het woord vreselijk bijna niet meer. Het is een woord dat vaak gebruikt wordt in een zin die positief bedoeld is. Hij is vreselijk leuk …

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  • When is enough, enough?

    When is enough, enough?

    Blogs, Peter Kapitein
    Posted on Tuesday, March 17th, 2015 at 9:36 PM by

    Approximately 200 billion euros is spent on cancer research worldwide each year. This statistic could no doubt be slightly qualified; it may be higher, it may be lower.

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  • The inspiring story from Seun Adebiyi

    The inspiring story from Seun Adebiyi

    Blogs, Seun Adebiyi
    Posted on Friday, February 6th, 2015 at 3:15 PM by

    I’m training for the Olympics in two sports, but chances are you’ve never heard of me. There aren’t a lot of Africans in contention for both the Summer Olympics in swimming and the Winter Olympics in skeleton

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  • The value of Food: crushed between evidence based and ignorance

    The value of Food: crushed between evidence based and ignorance

    Blogs, Gaston Remmers
    Posted on Monday, January 12th, 2015 at 10:51 AM by

    Reducing the Incidence of Cancer is not only desirable, but also an immense reality.

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  • Ochtendhumeur

    Ochtendhumeur

    Blogs, Gerda Schapers
    Posted on Friday, December 5th, 2014 at 7:09 AM by

    Je hebt van die dagen.

    Ik sta op, lichamelijk voel ik me goed. Iedere ochtend als ik wakker word sinds ik kanker heb is dat de eerste gedachte: ‘hoe voel ik me?’ En al ruim 3,5 jaar kan ik zeggen : ‘goed’. De lokale behandelingen die ik onderging hadden geen bijwerkingen. Het lijf blijft -ondanks de kanker- fit.

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  • Het is uiteindelijk onze zaak

    Het is uiteindelijk onze zaak

    Blogs, Peter Kapitein
    Posted on Friday, October 31st, 2014 at 2:42 PM by

    De gezondheidszorg is er vanwege ons. Omdat er patiënten zijn, is er werkgelegenheid, industrie, omzet, winst en verlies en nog veel meer. Iedereen die je rond dit thema spreekt zegt dit te weten. Mijn reactie is veelal; dat je het weet is mooi, maar voel je het ook zo? Handel je er ook zo naar?

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  • Naïef optimisme

    Naïef optimisme

    Blogs, Jolanda Glas
    Posted on Tuesday, September 30th, 2014 at 1:39 PM by

    En daar zitten wij dan, mijn dochter en ik. Tegenover het vertrouwde gezicht van de oncoloog van mijn man. Mijn man is een aantal maanden geleden aan de gevolgen van erfelijke pancreaskanker overleden en naar aanleiding daarvan bood deze vriendelijke arts een nagesprek aan.

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  • De patiënt bestaat niet. Ze staat voor u.

    De patiënt bestaat niet. Ze staat voor u.

    Blogs, Peter Kapitein
    Posted on Wednesday, June 18th, 2014 at 12:05 PM by

    De patiënt bestaat niet. Ze staat voor u.

    De patiënt bestaat niet. Ieder mens, iedere patiënt, verschilt. En moet je verschillend behandelen. En toch halen we alle patiënten langs de richtlijn

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  • Verschrikte ogen

    Verschrikte ogen

    Blogs, Geert Bakker
    Posted on Sunday, June 8th, 2014 at 11:57 AM by

    GOED.

    Dat is mijn korte en eerlijke antwoord op de vraag die veel mensen mij stellen, zoals bijvoorbeeld ook Robin. Vervolgens kijken twee verschrikte ogen mij aan.

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  • Wat doen we patiënten aan?

    Wat doen we patiënten aan?

    Blogs, Peter Kapitein
    Posted on Sunday, May 4th, 2014 at 1:54 PM by

    Haar noemen we M. Het ziekenhuis waar ze voor darmkanker gediagnosticeerd is en behandeld gaat worden Ziekenhuis-A en de twee andere ziekenhuizen, in dezelfde plaats

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  • Goede zorg kan niet zonder Patient Advocates

    Goede zorg kan niet zonder Patient Advocates

    Blogs, Veronica van Nederveen
    Posted on Tuesday, April 15th, 2014 at 1:53 PM by

    Waarom is het werk van Patient Advocates van Inspire2Live essentieel voor goede zorg? Als je ziek bent, wil je snel helemaal beter worden. Dat kan de patiënt vaak niet alleen, daarvoor is dan professionele hulp nodig.

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  • Want to prevents genetic disease? Study the healthy…right now: Stephen Friend at TED2014

    Want to prevents genetic disease? Study the healthy…right now: Stephen Friend at TED2014

    Blogs
    Posted on Tuesday, April 8th, 2014 at 8:48 AM by

    Stephen Friend wants your genes — no, really. Today at TED2014 he announced  the Resilience Project, a new crowdsourced effort to understand the quirks and patterns of human genetic code that control — and could help treat — genetic diseases.

    Read more..

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  • Scientist René Bernards about new discoveries in melanoma and KRAS colon cancer

    Blogs
    Posted on Friday, March 28th, 2014 at 9:37 AM by

    Scientist René Bernards tells about new discoveries in melanoma and KRAS colon cancer in Dutch TV-program De Wereld Draait Door.

    Watch the show here: http://www.uitzendinggemist.nl/afleveringen/1407295 (talk from 4.25 till 17.45)

    Show aired on 27 March 2013.

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  • Blog Peter Kapitein – ‘If about us, not without us!’

    Blogs
    Posted on Monday, March 17th, 2014 at 9:43 AM by

    ‘Give people rules and they stop thinking for themselves’. I actually believe this to be true. We’re always talking about our own responsibility and free will and do not realise that rules do nothing else than impose limits on our own responsibility and free will. Or worse than that; we do realise it, but we do nothing about preventing the number of rules from increasing. Our own responsibility shrivels and free will only exists in our memory. We stand by and do nothing; we do not dare to go against the flow for fear of being rejected. When something goes wrong, there is always a call for more rules and punishment, and if you do not join the cry for more rules, more severe punishments and drastic measures, you are very likely to be accused of not wanting to solve the problem. It is exactly our own responsibility and free will that has to provide the solution, however. Away with those rules: have doctors and patients decide for themselves. Of course patients should be the ones to decide, it is their life after all.

    I recently saw a programme on TV about the differences in patient care in the Netherlands and Germany, among other countries. A patient went to Frankfurt for advice on metastasized breast cancer and visited Dr. Vogl, a respected intervention radiologist at the University Hospital in Frankfurt. Dr. Vogl found that the patient might benefit from TACE-treatment. He did not guarantee success, but informed her that there were chances of success based on his knowledge and experience of this treatment and the diagnose the patient was given. Doctor and patient then discussed starting the treatment. Dr Vogl took his time and made the patient feel respected and heard.

    Sometimes patients decide to go abroad to be treated. It is uncalled for to say that treatments there are inadequate, or that they offer false hope. Here is a patient who is desperate because her breast cancer has metastasized, she was told that there was no more treatment available to her and she refused to accept this because she is just as desperate to see her children grow up. If she then turns to an excellent physician in Frankfurt, it is only right for us to support her. To advise and assist her with knowledge and experience. We left this woman to her own devices by telling her there is no more treatment, and simply say on TV that ‘going abroad without thinking carries risks’. There may be complications; she may even die! This is yet another example of the unnecessary divide between patients and doctors. Patients like this woman can always be treated, as long as there is life, there is hope. This is what care providers and health insurers must understand. Everyone wants to see their children grow up and become grandparents. We want to see everyone grow old happily and healthily. If care is offered abroad by respected academic institutions, why not bring it to the Netherlands, and until that time reimburse patients for treatment abroad. By the way, Dr Vogl’s suggested treatment is also available in the Netherlands, but is kept from this woman and mother because she does not meet the set requirements. Dr. Vogl expresses the situation very well. Treatment in the Netherlands is at the highest possible level, but everything is covered by rules and protocols; 5% of patients do not comply with these rules, which is why Dr. Vogl treats them personally.

    If we can offer the best treatment in the Netherlands, why not offer it to all patients? I’m a great supporter of health care in the Netherlands; doctors and nurses have only ever given me the best possible care. I know we can go the extra mile here for patients who refuse to give up. Don’t tell me that patients sometimes do not want to go on, or even worse that you as a doctor think that the patient should not want treatment anymore. Quality of life is something patients and their loved ones decide on. What is enough for one person is not necessarily enough for another.

    The internet and broadly available information has led patients to the best treatment, which we are lucky to have available in the Netherlands in almost all cases. In some cases the best treatment is found abroad. Oncologists step down from you ivory towers and meet with patients to discuss the options of bringing treatment to the Netherlands. Leave patients, oncologists, and health insurers to discuss and solve this together. Let patients decide, it is about them. We should be aware that we all become patients in the end, the time that you need some form of treatment will come. Whether in your capacity as employee, policy holder, or voter. Healthy people and patients, boundaries are blurring: ‘If about us, not without us’.

    Peter Kapitein, Inspire2Live
    Never, ever quit!

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  • Blog Peter Kapitein – Structurally dissatisfied

    Blogs
    Posted on Monday, January 27th, 2014 at 8:09 AM by

    This morning I had a conversation with one of our patient advocates about making drugs available to patients. About the fact that this takes a long time and why this is. And worst of all: that there are drugs in the pipeline that may work very well for patients, but that have not yet been made available. First ‘all sorts of procedures must be followed.’

    Recently, I saw the documentary How to survive a plague about HIV/AIDS activists in the ACT UP patient advocate group. I was deeply impressed to see how people facing a certain death sentence fought for their rights and battled to achieve that the drugs development process was dramatically accelerated and drugs were approved much faster than before. ‘We are dying and you are doing nothing for us’ is what they told the US Food and Drug Administration officials in no uncertain terms. The ACT UP people occupied the FDA building and did not leave before their questions were answered. Why is it taking so long? Why aren’t you working harder for us? Why do you decide whether or not drugs become available to us? Who’s dying here, anyway?

    The enormous commitment shown by the ACT UP group during the eighties and nineties was one of the main reasons why drugs development and approval was finally speeded up. I was impressed by the interview with Dr. Anthony Fauci, the then head of research at the National Institute of Health (NIH). He responded to ACT UP’s bitter reproach by honestly telling them: ‘At the NIH, we didn’t tell the researchers what they had to do. It’s true that we allowed them to do what they thought was best.’ Admitting that ACT UP was right. The ACT UP activists also made an unrelenting effort to be included in committees occupying themselves with research, approval and trials. And what struck and impressed me in particular was that these people knew exactly what they are talking about.

    And this is precisely what it is all about. As long as patients do not manage to acquire the right position and are not accepted as an equal partner in discussions and decisions, nothing will change. Research will continue on its own path and pharmaceutical companies will only produce those drugs that they consider to be important to their turnover and profits, and regulators and enforcers will be allowed to continue their fixation with procedures and we will still call cancer an urgent problem ten years from now, and even more people will die.

    We should ensure that patient advocates determine the cancer research agenda. The argument that they are unable to is simply invalid. They are very intelligent and hungry for new knowledge and are driven by a unique force: losing their own lives and those of their loved ones. Good patient advocates are very well able to talk sensibly and freely to good researchers about what to examine, and they are heard. I see this every day, but there is no sufficient clout.

    Patient advocates should also be involved in setting up industry trials, which they have proved to be able to do. Merck at the time involved HIV/AIDS activists in setting up trails, asked them for their opinion and involved them in decisions. So don’t say that it is impossible.

    Regulators should be told that patients will not and cannot wait any longer. Too many are dying still. Not only should trials be set up better, but also faster. There are all sorts of safety regulations before drugs are introduced, but what about patients who are dying? They are prepared to do anything to survive, and it is their lives we are talking about. Here too, we can learn from ACT UP. People with AIDS called these not yet thoroughly tested drugs, ‘What the hell drugs’, meaning there is no harm in trying, it can’t get any worse. We are letting down people who are dying by denying them drugs that are in the pipeline, but have not yet been fully tested. One of our gravely ill patient advocates hit the nail on the head by saying: ‘There is only one thing worse than false hope, and that is no hope at all.’

    We should pool our resources and not be satisfied with the work that we are doing. What we are doing is not enough and we are not making enough progress. This is why we should call in help. And there is help available: patients and patient advocates. They are well-educated, motivated, informed, eloquent and structurally dissatisfied, which is appropriate to a life-threatening situation.

    Peter Kapitein, Inspire2Live
    Never ever quit!

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  • Blog Peter Kapitein – What can I do about it?

    Blogs
    Posted on Thursday, November 14th, 2013 at 9:42 AM by

    The other day I attended a gathering of the European Organisation for the Research and Treatment of Cancer (EORTC), where I talked to some 75 doctors, scientists, pharmaceuticals staff, government officials and also, luckily, naturally, patients, about the set-up of new types of trials. And I thought, “What can I do about it?” And then I thought, “Yes, I can do something about it.” Together, patients can even do a lot about it. In fact, they must do something about it. Because that is in their own interest.

    Trials are carried out to thoroughly test new drugs. Does the drug work? Isn’t it too poisonous? Will it kill the tumour and, perhaps, the patient as well? What dosage is required? Once a drug is found safe and effective, it can go to the market and patients may use it. By then, ten years will have lapsed, one billion dollars been spent, and the bottom line is that most patients using it will, to the tune of many tens of thousands of dollars more, eke out bad-quality lives for a few months longer. Drugs work poorly, if at all. We have known this a long time. So why don’t we do something about it? Why do we spend tens of billions of dollars a year researching drugs that for decades have failed to achieve much progress? With the exception of blood cancers and testicle cancer, the major advancements have all been achieved in early diagnosis, surgery and radiotherapy. We have known this a long time. So why don’t we do something about it? Surgery and irradiation can’t be patented and don’t bring in massive profits. How inconvenient. Drugs, by contrast, can be patented and after ten years, when the patent expires, you can, if you’re clever, modify your drug a little and re-patent it for another ten high-earning years. But India and China are about to change all that. They will just dump the generic drug on the market at knock-down prices and boy, does it make a difference!

    But what if you invite patients to the discussion and the decision-making meetings? If the object is to market only drugs that ensure many years of high-quality extra life, at a price that is “acceptable to society”? If a few robust patient advocates are invited in, who do not bow or bend, who come informed to the teeth, are really independent and gifted with a smooth but sharp tongue? If these advocates turn up the heat to scalding level and just say, “We can do better!” like José Baselga at our Amsterdam conference in January 2011. “We are not meant to be here for one or two months life extension.” To me, the operative word here is “we”. If you want something done, never point at others. It’s a problem patients run up against, so patients should be prepared, and allowed, to help. And boy, can they make a difference! Patients should be given at least equal voting rights in the committees that set the research agendas. Because it’s all about their sickness. They can see that more patient data is made available for research, more tissues, more blood. They will see that the research community amalgamates into a real community, where people and firms collaborate unselfishly – for a change, they will see that the publication-citation cycle is broken and remuneration structures are reformed into a culture where science is appraised and rewarded for its contribution to the well-being of patients and their loved ones, of society as a whole. The patients will make a pact with the pharmaceutical industry: patients will gladly volunteer for trials, and the industry will lower the price of drugs to socially acceptable levels. No more astronomical amounts to pay for unnecessary spending on inefficient research projects. That is the kind of help and positive action I imagine patients might have to offer. But it will have to be based on equality and on voting power. Otherwise it won’t work and we will muddle on. Another month of miserable life caused by the drugs’ “side effects”. Another few hundred billions of research money down the drain. It just doesn’t make sense, does it?

    So yes, we can do something about it. And it’s about time, too. Ten million die every year! So take up the challenge and do something about it. And open the door when we patient advocates knock. It will make the world a much lovelier place.

    Peter Kapitein, Inspire2Live
    Never ever quit!

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  • Scientist René Bernards talks about getting cancer under control

    Blogs, Medication
    Posted on Thursday, May 9th, 2013 at 9:21 PM by

    René Bernards, one of Holland’s most renowned cancer scientists, and also among the leading cancer scientists in the world, won another award from the Dutch Royal Scientific Society (KNAW) of 1 million Euros for his outstanding research. In Dutch National TV show DWDD he talks about getting cancer under control within the next decade(s). Very interesting interview (in Dutch).

    Interview with René Bernards on DWDD

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  • Let’s share and implement faster

    Molouk Milani, Patient Advocates
    Posted on Tuesday, April 16th, 2013 at 6:42 PM by

    By Molouk Milani 

    Almost daily a new discovery on cancer appears in the news. On the one hand it’s very promising and gives hope. On the other hand it doesn’t feel like we can benefit from it yet. The discoveries and developments might be different and innovative. Yet they are equal in one aspect: ‘in the future new interventions to treat cancer might be developed’. And with this sentence the beam of hope diminishes into just a little spark. Future cancer patients will maybe benefit, but if you have cancer now it will not help you. And that is just impossible to accept. Time is hours and minutes, but when you have cancer time is life. Life that is just too beautiful to wait for.

    When I had cancer I started to think about the different aspects of my disease. Apart from the physical ones I realized that cancer is also a universal disease. We all suffer from cancer; cancer does not discriminate for sex, race and age. It affects us all. We suffer the same. And although the reason is a sad one, the awareness of the universality of our suffering from cancer deepened my conviction that the earth is one country and the people citizens from this same country and that working together is the natural action that flows from it. Together we are so much stronger than alone!

    Personally I felt this during my illness. Other cancer patients helped, with support and comfort. Family, friends, neighbours helped with making life easier and happier! And doctors and scientists helped by consulting with me about treatment plans and goals and by making new insights available in the treatment protocol. I myself tried to help a bit too, by giving my DNA and complete access to my medical file to the cancer centre I was treated. It is powerful to be together with so many people in getting just my cancer under control. And when this individual scale is enhanced into a global scale, it must be impressive to witness what can be established.

    When I see the night with the impressive black sky, the shining stars and sense the infinity of our universe, I can only dream how promising and powerful it must be when knowledge is truly shared. It must resemble the infinite universe. Oceans of knowledge with limitless potencies of discoveries, with the goal to all live a happy life. To keep knowledge to oneself or to a small selected group of people is in the light of our undeniable oneness unjust, painful and harmful. To keep knowledge to oneself is preventing others from knowledge and causes unnecessary lives taken in the battle against cancer.

    As we are one people on one planet, our goal is the same. We all want cancer to be under control. Therefor, let’s truly share; let’s be completely open in the knowledge and discoveries made. Let us all join in the battle against cancer; patients, doctors and scientists. And let us all be happy because it will make our common victory come sooner and better then all of us separately can dream of. Then, reading an article with new developments in cancer research one sentence will again become common ‘in gratitude of our joined knowledge and action we are convinced that cancer patients within the near future of two years may benefit from it, and where life’s are currently at risk we will do our best to implement earlier.’

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  • The Fellowship for Life

    Clinicians, Jan Gerrit Schuurman, Medication, Patient Advocates, Researchers
    Posted on Thursday, March 7th, 2013 at 6:01 PM by

    By Jan Gerrit Schuurman

    This is the third year of our fellowship blog. In 2009 we started a tour, which at the time was called “Three boys in search of Life”. Helped by top scientists and wise men, we embarked on what has become an immense journey.

    The partnership of three grew into a fellowship. We started this tour, and were joined by many. Other individuals have become as much involved as we are. A group of patient advocates was formed and is now at the forefront of change. A fellowship for life! We have found out, through the words of wise men and through hard personal experience how complex cancer is. It is so complex because we are immersed in it. It is not just that more than 40% of the people get cancer somewhere in their lifetime. It is not just that we cannot live with and we cannot live without it, because cancer is inherent to the development of life, especially in a long life and a life worth living. The problem with cancer is also that we can do so much about it. It is a problem that can be solved, if not completely but certainly an immense portion of it. There is much we can do to prevent it from occurring. But changing our prospects requires collective action and initiative taken by many individuals in their own privacy. Taking up this responsibility and acting on it, that is our challenge.

    In January 2013 the third annual conference of Inspire2Live was planned. Its theme is the reduction of incidence of cancer. The third Inspire2Live Annual Conference is again organised in cooperation with the Dutch Central Bank and Dutch Royal Academy of Arts and Sciences. The main conclusion: we know very well what to do to reduce the number of cancer patients. Tobacco use alone accounts for some 30% of all cancers. There is also much to gain from cutting down alcohol intake, reducing obesity and encouraging exercise and healthier food. Epidemiological and tumor biological research has shown that the reduction of cancer incidence should first and foremost be kick-started through improved prevention. Higher quality education with a specific focus on health at an early age is essential. But there is also an increasingly clear scientific basis for closer attention to prevention geared to citizens’ and patients’ risk profiles.

    Prevention reduces cancer incidence by 40%
    Prof. Gerd Gigerenzer, keynote speaker at the conference, made this remarkable statement:
    The effect of screening on cancer mortality has been shown to be nil for many cancers, and small for a few. The effect of cancer drugs, for most solid cancers, is in the order of a few weeks or months of life prolonged, with heavy loss in quality of life.

    An estimated 50% of all cancers are due to behavior, cigarette smoking (20-30% of all cancers), obesity, fast food, sugary drinks, and physical inactivity (10-20%), and alcohol abuse (10% in men, 3% in women). Thus, the best potential for reducing the burden of cancer is prevention, that is, health literacy.

    To be successful, prevention programs has to start early in life. To tell a 15-year-old to stop smoking is too late. Eating habits are formed in childhood. The planned Groningen health literacy project starts in first grade, and continues through puberty. It will be taught by the regular teachers, e.g. embedded in sports and biology, and its goal is to make young people risk competent. The goal is not to tell them what not to do, but to help them to make their own, informed decisions.

    Prevention: the main recommendations
    The attendant experts in fields including cancer, nutrition, behavioral sciences and molecular biology provided the following guidelines that will help to significantly reduce the risk of cancer.

    • General: Prevent overweight and obesity (risk factor) by means of a healthy diet and exercise.
    • Tobacco: Quit smoking (smoking accounts for some 30% of all cancers).
    • Alcohol: Alcohol consumption increases the risk of cancer and does not make for a healthy lifestyle.
    • Nutrition: Eating red meat (beef and pork) poses a risk, but this does not apply to poultry or seafood.
    • Fats and sugars are not carcinogenic in and of themselves but they are more likely to cause overweight.
    • As to many other nutrients, including coffee, artificial sweeteners like aspartame and a wide range of additives that were once considered carcinogenic, there is little (or too little) evidence.
    • Exercising sensibly and more often has a preventive effect on healthy people and (former) cancer patients alike.

    There is also insufficient evidence on a number of other foodstuffs that were believed to protect against cancer, including fibers, vegetables, fruit and antioxidants. However, fruit and vegetables and high-fiber food are indeed part of a healthy diet. Alcohol is not, even in small quantities.

    Research on prevention in children
    Many children from socially underprivileged families miss out on that knowledge and competence. This has prompted Inspire2Live to join forces with several universities at home and abroad to set up a project in Oost-Groningen aimed at familiarizing young children with the importance of healthy choices. The conference speakers and attendants were unanimous in their opinion that many improvements can be initiated top-down, involving parties like Inspire2Live, the Royal Netherlands Academy of Arts and Sciences [KNAW] and the Dutch Cancer Society [KWF], and that the community is supported regionally and locally in the development of a healthy lifestyle.

    Patients are at the center
    The conference was unique in that it was attended not only by physicians, scientific researchers and fund-raisers but also by a large number of patients. For two days they joined the exchange of ideas and discussions about how to better combat cancer and improve preventive action. In the months ahead, these Inspire2Live “patient advocates” as they are referred to will also be taking the lead in generating increased awareness of and dedication to prevention. All those involved considered the interaction between patients, doctors and researchers highly worthwhile and necessary to promote further action.

    Bob Weinberg expressed the importance of cooperation as follows:
    ‘You Patient Advocates are by far more convincing when it comes to prevention then a scientist can ever be’.

    A final note
    Prevention is way under supported. But let us not forget treatment. While a large portion of cancers can and should be prevented, let us likewise strive for better care, better treatments, and better prospects for those who have cancer or were diagnosed with it at some point in their life. We have a multiple responsibility: getting cancer under control means we do what we can. That we reduce incidence, and we improve treatments and quality of life.

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  • The Power of Passion in Innovation

    Patient Advocates, Peter Kapitein
    Posted on Thursday, November 22nd, 2012 at 9:25 AM by

    by Peter Kapitein

    Working for a better life for people living with cancer and for their loved ones is the mainstay of our mission. With every new step we take, we first ask ourselves ‘What’s the benefit for the patient?’

    Inspire2Live is the umbrella organization that coordinates a range of programmes and events (also referred to as our beautiful sons and daughters) designed to accomplish our mission. What began as a joke in 2006 (cycling up mount Alpe d’Huez 6 times on one day) in a mere 5 years evolved into an initiative with a EU 50 million endowment earmarked for cancer-related research and applications, 6 events in Europe and the United States and relying on hundreds of volunteers that working with passion for the patients and their loved ones. Besides these national events, Inspire2Live has set up a global initiative called Understanding Life!, bringing together the best researchers and clinicians fully committed to getting cancer under control in 10 years’ time.

    Is this a simple goal? Yes it is, even though what needs be done will not always be equally easy. But ‘Never Ever Quit’ being our motto, we know one thing for sure: on 17 January 2021 cancer will be under control and people will be living Happy and Healthy lives in Harmony with cancer.

    In everything we do the patient is leading. We set up projects and activities with and around the patient. We take this approach to our events but also to research projects and treatment programmes. Whatever we do, it is always a joint venture between patients, researchers and clinicians. But patients First! We connect these three groups, asking them to give the best they have and then a bit more. We will always do so independently. While aware of all the systems we are dealing with, we make sure we will never become part of them. By steering this course, we are able to choose for the benefit of the patient under all circumstances.

    Now is this only possible for companies specializing in cancer care, you may wonder? Of course not. The principles of our initiative are simple and can be copied to every organisation. Let me explain this.

    Always tell why you do the things you do and not just what you do. People don’t buy what you do, people buy why you are doing it. Remember that the what and the how are always debatable, but that the why never is. And there is always a why in every company. Most of the time we have forgotten this but believe me: there is.

    Take to heart Mahatma Ghandi’s words: You must be the change you want to see in the world. If you want to achieve something, you must make the first step yourself and see what others do with it and how they respond. Then you make the second step, probably with one or two other people that have joined in to help you. Because they see why you do it they help you with the how and the what.

    Use as few rules as possible and see to it that responsibility is borne at every organisation level, down to the lowest level. The more rules the less thinking. People stop thinking if there are too many rules. Most of the people employed at your company know better how things should be done than you know. You know why the things have to be done. Most of the people in the company love responsibility. So give it to them and enjoy an empty agenda.

    Along the lines of these few principles we organized Inspire2Live, the events and the program Understanding Life! The most essential part is of course the Passion that is brought in by all the people that work in our organization. Passion for the patients and their loved ones. And we combine this with our strong motto: ‘Never ever quit!’. So if we are faced with a disappointment or failure we allow us only 5 seconds of sorrow and then ask ourselves: ‘What can I do to make it a success?’. We never complain because that’s useless. We never want to be in a position that we must explain to the patient that we stopped because of some problems that we couldn’t solve. Don’t search for a solution. Find it! And always be aware of The most urgent question in life: What do you do for other people? (Martin Luther King).

    The coming years we will make the next steps. We will set up more than 20 PR and awareness-enhancing events across the world and will raise more than EUR 250 million per year, if not more. But the most important goal that we will meet is that people will lead Happy and Healthy lives in Harmony with cancer. Together with their loved ones. Because that is the essence of life: living together.

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